How oftern do you do it?

[ian]

Hi all,

I am new to this forum, I have tried many others but reading these posts this seems to be the most active with people to give advice and life experiences which is fantastic and I will try to give mine when I can.  I won't go into my life story at this time as I know we all have our issues and demons that we are trying to over come. I am 36 living in Canada and was diagnosed with CVID about 3 yrs ago, prior to diagnosis I was extremely ill with everything from shingles to pneumonia but since my transfusions my infection rate has drop significantly. 

I know that the day of and the day after my treatment my mood changes and I become grumpy and agitated as I know what side effects are coming from the treatment. Last week out of the blue my wife tells me that she wants a divorce (that story is not for this forum) and before she walks away she tells me that 'you have changed'. This past week has given me time to think (a lot) about the last 3 years and all the c&^p that has happened in my life and I have come to discover that she is right, I even asked other family members if I've change and the outcome is I have changed and not for the better. I was told that the old bubbly outgoing Ian had disappeared and I was more selfish in my actions and less approachable. I am not putting it all down to the CVID but I believe that it is a big apart of the problem.

I am sure a lot of us think, why me, what have I done, especially with some of the side effects that we get but I have come to the conclusion that I need to change. Since my wife has left me I need to change for me and find my old self again and I hope to be able to start here by finding out more information from other who are going through the same treatment and what option I may have.

At the moment I have the treatment every 4 weeks, which doesn't work for me, and I was wondering what other people do? I know I need to speak to my Dr. but does anyone push it beyond the 4 week mark to say 6 weeks? I also take intravenous Benadryl concoction prior as a precaution (I went into anaphylactic shock once, I think that's what they called it) which I hate taking as it makes me extremely uncomfortable. I have thought about stopping the Benadryl but I'm not sure what the doc will say yes.

Any personal thoughts on stretching it would be greatly appreciated. I did tell my mother this week that I had thought about stopping the treatment altogether but as mothers do she shut that idea down before I could even finish the sentence.

Thanks Ian    

[aryani]

Hi Ian,

I am sorry to read that you are going through difficult times.

All serious illness will affect your quality of life and your mood (whether it is CVID or something else). And yes, a lot of people become more selfish. Staying afloat is hard work!
If you think that your transfusions are part of the problem, maybe changing to another brand is an option. Instead of prolonging the interval between infusions, you could also discuss if shortening the interval is an option. I receive 2-weekly infusion, instead of 3-weekly. I've got less side-effects during treatment and I have more energy (in the 3rd week I was usually tired and grumpy). The downside is that is more time-consuming. Changing from IVIG to subcut, can be an option as well...And maybe you can try a different antihistamines?

I hope you will morph into your old self again.

Aryani.

[john]

Hi Ian, as a fellow patient I can understand lots of the things you say. I have been diagnosed for a hell of a lot longer than you, yet I still have days when I get very low and depressed, and my wife tells me I am hard to live with at these times too. I used to do IV every three weeks, and you have to understand that the substance we infuse is not a drug, but a human plasma product that has a life-span not much longer that 3 weeks when it's in your bloodstream, so this is why most of us use a three week period. Stretching it to will only lower its efficacy, and then there would not really be any point in having it at all!
Last year I changed to sub-cut, self administered at home, and this certainly smoothes out that feeling of getting tetchy towards infusion time and feeling a bit drained three weeks later. It also gives me some flexibility as to when I infuse, so if my wife has plans for us I can infuse earlier or later and that causes less tension and resentment about my being ill. It IS VERY HARD being married to a chronically sick partner, and from my talks with other patients I know this to be generally true. We all promise to stick it out through sickness and health, but our partners are the ones who have to flex more than we do in this respect. By the way, another advantage of sub cut is less side effects and better levels because you "top up" every week, and this makes me feel better than before. It's not painful to do, and you can do it on your own as long as there is someone you can get hold of in the unlikely event of something going wrong.
Hope you regain your old happy self Ian, let us know how you're doing!

[ian]

Thanks guys for your help, I have never heard of sub-cut and have done some research online. I have my next IV on Tuesday so I will bring this idea up with the doctor and see what he thinks of the idea. Fingers crossed

Cheers

Ian